Family With Local Ties Creates Viral Video To Help Save Daughter With Life-Threatening Condition
By Kristina Dougherty
COLUMBIA, S.C. (CBS) -- For one South Carolina family, the power of social media can help save a little girl's life.
Four-year-old Eliza O'Neill is described by her mother, Cara, as an affectionate, happy, active little girl who always keeps you on your toes.
But by the time Eliza is five, she may lose the ability to speak because of a rare condition called Sanfilippo syndrome.
It is a condition that an estimated 2,000 children around the world are born with, or in other words, 1 in 70,000 new births.
Eliza's dad Glenn, who grew up in Wilmington, Delaware says, "When it builds up to a point, it begins to take over brain and body. Children lose speech, mobility, ability to feed themselves, have seizures, and then complete failure and death. It is a terrible disease."
Cara says of the diagnosis, "You just get this sinking feeling in the pit of your stomach that this is really bad."
Early to mid teens is life expectancy for Eliza's Type A Sanfilippo.
There is a cure for Eliza's condition, but it will cost about $2.5 million to produce the gene treatment and properly run the trial.
The O'Neill's began raising money through fundraisers, including one in Drexel Hill that raised $50,000, but they quickly realized it would not be enough. They decided to make a viral video, hoping it would catch the eye of thousands willing to lend a helping hand.
Cara says, "If the money doesn't come in time, she will stop speaking within the next six months. She will stop walking within the next two years, she will stop being able to feed herself within the next three to four years and she will develop seizures and movement disorders. She will experience a lot of pain and suffering and then she will die."
"It is so important because this is Eliza and others only chance to live. And it is has worked in animals. The research is done. They have figured it out," says Glenn.
He adds, "We need to fund this clinical trial portion. Thanks to donations from around the world, we are funding the medicine production. The final step is $1 million more to fund the clinical trial and we are looking to raise that before October. We can't have money be a limiting factor in not keeping this clinical trial on schedule."
So far, the family has raised almost $800,000 through their Go Fund Me site, but there is still a ways to go.
Cara says, "Hope is a nice word but we need action. There is something very real that exists and with enough money it will happen and will happen in enough time for Eliza and other kids."
Glenn adds, "Eliza and other children literally don't have a moment to spare. The disease is working on them every second. Each progress a bit different but most don't talk by five-to-six years of age. Eliza is four and a half. We know what is coming. We race to head it off."
At the end of the video, Eliza makes a heartbreaking plea, "Please share, please share."
To watch Eliza's video and visit her Go Fund Me site, click here.
